It’s been too long since I had time to write! The quantity (and hopefully quality!) of the following article should make up for that!
Over the past several months we have reached several milestones with Yehoshualeh which kept things very hectic but phenomenally exciting! The main one being – that for practically the past three years since Yehoshua was born he was entirely ventilator dependent – his lungs were unable to breathe on their own without assistance. CHASDEI HASHEM KI LO SAMNU KI LO CHALU RACHAMAV! – Just recently, several weeks ago, for the first time ever, for two hours a day, they took Yehoshua off of the ventilator! For the first time in Yehoshua’s life his lungs were breathing on their own without being entirely dependent on aid from an outside machine!! A few months prior to this monumental, breathtaking, awesome, achievement, Yehoshua had switched doctors. His original doctor was the type who was on the more difficult side to deal with and did not commonly express his belief in what Yehoshua may one day be capable of doing. When we told this doctor that Yehoshua got off the ventilator for 2 hours a day – the guys mouth dropped open so fast and so wide (lucky his jaws were holding his mouth together!) I must admit, it was a geshmake feeling for us!
PUBLISHED AND EDITED BY SHMUEL T. ADLER
Over the past few years since Yehoshua was born we received so much help and
strength from so many people around us. Without everything everyone did for us it is doubtful
how we would have survived all we have been through so far. We are surrounded by loving
family, friends, and neighbors both close and far and we are full of deep appreciation for all of
this. There was a particular chesed of note which was done for us which I would
like to make special mention of in this article. It came about from a girl who we will call Chava Gitty. I believe that what Chava Gitty did for us is something which arguably went above and beyond any single
one chesed which has been done for us in the past 3 plus years that we have been in this
parsha. What she did was life-saving for us. If someone would find the opportunity to do this for another
person who has a family member with medical needs – I really believe it would be a literal life-saver for
them as well.
Before I begin saying over this story it is important to get crystal clear one thing and that is the
following caveat. Everyone finds themselves in different life situations and each person has their own personal limitations and different things which are happening in their lives. Followingly, everyone has their own personal avodas G-d. Therefore, when a person is trying to do chesed for others they must take their entire life picture into account, ie: having a spouse at home, having children to think about, or parents or other family members etc. Just as long as
a person is doing as much as they can while taking into consideration their personal situation
and avoda, that is all G-d expects them to do and that’s all one should expect from themselves.
Just because one person had the time to do the following chesed I am about to write about, or any other chesed, doesn’t mean that another person must feel that they should have done the same and that they are amiss for not doing so. For us personally, we know that all of our family, friends, and neighbors
are doing what they can for us and we are full of a deep appreciation for it all. Like I
wrote, we can’t begin to imagine how we would have survived the past 3 plus years if we didn’t
have everyone’s outpouring of love and support. This article is not intended and should not at all
create any misgivings for anyone.
With that introduction, I feel it imperative to share this story; firstly as an
expression of our appreciation to Chava Gitty; but even more so, for whatever chance there is that the
sharing of this story would result in even one person going the extra mile to do even one chesed to assist a person with a sick family member in need. Here goes the story of the life-saving
chesed which Chava Gitty did for us. There is a lengthy but very necessary background which must come first.
The ER Experience:
Already starting before Yo’T a series of occurrences happened, both involving Yehoshua and
not involving him which made things very hectic for us. We were managing to make it day by
day throughout it all. Yo”T got off to a great start – we split the first days of Yo”T, spending one day at home and one by my in-laws which provided us with a beautiful first days of Yo”T in which we spent very nice, enjoyable time with family and
had some time to rest up from the craziness of the preceding weeks. Yehoshua was doing well
and life settled a bit – at least on a small level. We were looking very much forward to
enjoying a “normal” pleasant rest of Yo”T which included going to Baltimore to see my parents
and brother, plus my sister who had come in from E”Y who I had not seen in months. First day of Chol Hamoed came. We went
to spend time with Yehoshua late morning. When we got there the
nurses said that they “forgot” to tell us this earlier, but Yehoshua hadn’t slept well the previous few
nights. It’s happened before, so we didn’t get immediately concerned. But as the day
progressed Yehoshua wasn’t napping at all and he seemed extremely agitated about
something. We tried repositioning him and all the other tricks that normally work to make him
comfortable but to no avail. He was constantly fidgeting and waving his arms. He was just not
settling down. He also had begun whimpering and then crying and grimacing at times. No one
could figure out what was wrong. I went to work (my office is close by) just to take care of a few
basic things which needed to be done. While I was there Nechama called me if I could come
meet her by Yehoshua a little earlier than planned, because he seemed extremely
uncomfortable. Already I felt those dark tentacles of stress begin closing on my heart, though I
told myself that this has happened before and it just took a day or two for him to settle. Thus
began the odyssey of a whirlwind which blew us twisting and turning all the way through Yo”t
until dropping us down on firmer ground almost two weeks later. I left work and started driving
to meet Nechama by Yehoshua. A few minutes into my drive I receive another phone call from
Nechama – Yehoshua has not settled down a drop, and they see that his hand and arm are
very red. They are not sure what the cause is and they’re not either sure what to do. The stress tentacles
squeezed just a weeny bit tighter. I told myself, “Its ok; A little redness could go away in a day or
two as well. Chol Hamoed may be a little more hectic than we planned, but things will settle and
at least we can re-energize during the 2nd days”. It gave me some reassurance and I continued
driving. But then I got another phone call from Nechama. Yehoshua has a fever, and they
believe he may have an infection somewhere. They are not sure what is causing the fever but
they suspect it may have to do with his hand. Maybe his hand is infected. Now his face
somehow got a bit bruised also. He doesn’t look good. And then … they have to decide if they need to send
him to the Emergency Room. Apparently Yehoshua had stuck his hand in his mouth and without
realizing the ramification of his actions (!) due to his agitation he accidentally bit down (very
hard) on his hand. That’s why his hand and arm were very red, and he had bruises there as
well. My mind continued valiantly fighting to keep those dark tentacles away. My brain went on
overdrive with explanations – Its just redness in his hand; there is no way he would need to be
sent to the ER for just a little booboo. [My wife is probably exaggerating how bad it looks!] Etc.
But already my plans of having a few hours to breathe over the remainder of Yo”T were slowly
slipping out of the realm of reality. I was about 2 minutes away when the final condemning phone call came. They
decided that they need to send Yehoshua to the ER. I should please get there even quicker; as quick as I can.
Nechama asks me how far away I am? I know how tough it is for any one person to handle
alone seeing Yehoshua look so uncomfortable and having all the pressure of him being sent to
the ER. I tell Nechama that I am only 30 seconds away. The clock is ticking – I now have just 2
minutes before I arrive to put together a list of the basic things we will need to take with us to the
ER. Once I get there I know that whatever clarity of mind I have left will cease to exist. As I’m trying to collect my thoughts, I arrive,
driving the wrong way through the one-way entrance to the parking lot so that I can get to the
nearest parking spot (I have the presence of mind to first make sure I can’t see any car moving from the oncoming direction!). I almost jump out of the car, a bit too fast, and get hauled right back in by my still buckled seatbelt! It is
so difficult to retain a clear head when so much is happening so soon. My brain, without any
help from me at all, is anticipating the chaos and exhausting sleeplessness which automatically comes along with any ER visit. I impatiently fidget while security is taking their time finding my
name in their computer system (which by now they’ve found hundreds of times already in the
past – can’t they let me go through quickly just this one time – aren’t they able to read on my
face that my son is about to be sent to the ER?!) Finally getting to Yehoshua’s room, I find the
doctor – a very kindhearted mentch, talking to my wife. He is patiently explaining why at this point there is no way that
they can keep Yehoshua even for a few hours longer until a bed in the ICU opens and we can
go straight there avoiding the entire trauma of the ER experience. They have no choice but to
send Yehoshua immediately, and he must go to the ER. The Dr. smiles, wishes us “good luck”
and takes his leave to go home. His shift is over and he is done for the day. I can’t help myself from
thinking, though I know its not his fault, how he is off to a comfortable, warm home to have a
good supper and comfortable bed. Yet with his simple “good luck” he is leaving us alone to a
place where the only thing not unknown is that for the next few days at least, life will be one, big,
overwhelming, exhausting, headache resounding and reverberating throughout all corners of
our heads. Honestly, there is considerably more detail which can go into describing the next few days of our “ER”
ordeal. I believe that what detail I am providing gives an accurate description of
just the first phases of what life becomes for us and any family, when they find out their
child/close relative who has medical complications must be sent to an ER. I will try to condense
a little. Now, top on the list of concerns to Nechama and I, is the fact that every single time
Yehoshua gets transferred anywhere, even not to an ER, there is always mix ups with his
medications.
The nurses insist every time that we have nothing to worry about – they are sending a med-list
with the transport team who will give it to the nurses there, and they will get all the meds down
properly. I don’t believe it ever happened as they said. Mix ups – very serious,
very scary mix ups, have occurred every single time. Every-Single-Time. That is until Nechama came up with the brilliant idea of
insisting that the nurses print up a few separate copies of the med list for us to keep with us.
Another major concern is another very scary one – the fact that the ER (and sometimes the
ICU) unbelievably takes hours until they could get a hold of basics which Yehoshua needs –
anything from vital back up medical equipment to seemingly much more simpler things such as
diapers etc. After going through this experience so many times we know that we need to make
sure that we take all of these as well. Plus a few toys or books for Yehoshua – after all a child is
a child, and he needs these things ER or not. Once these vital things are taken care of, we
need to worry about the “less important things” which happen to be really just as important as the others.
There is no way we will be able to cope and survive and have strength to properly take care of
Yehoshua through the coming hours or days if we don’t have something substantial to eat and
drink. Etc etc. The list goes on.
There is some silver lining here. Hashem in His great mercy gave me a wife who aside from being really smart is also on top of
everything – and is above and beyond when it comes to advocating for our son. Thanks to her, we by
now come a lot more prepared. This does not mean, though, that by any far stretch of the imagination
that the stress involved is alleviated by all that much. There is still so much to worry about.
The transport team finally arrives. The problem is that they don’t know anything about Yehoshua
– they’re usually meeting him and us for the first time. For transporting alone, there are details
which they need to be aware of. And not all transport teams are willing to hear directions or
suggestions from “unexperienced parents”. (And then some teams, after finding out that we’re not such unexperienced parents, do the opposite and don’t do a thing and just leave everything to fall
on our shoulders). We finally finagle the team into letting us position Yehoshua in a way that’s
best for him and into listening to our suggestions on how to best care for him. We are off. Fast forward to
the ER. The exhaustion begins. Yehoshua’s 1st wave of meds are due but not only isn’t there a
nurse to be found to administer the meds – even if we could find a nurse, she wouldn’t know
which meds to give – and even if she knew what to give – it needs to be entered into the computer system
first, so anyway she’s not allowed to give his meds. So he’s getting his meds late. And these are meds which are dangerous if they are not
given at a certain time. On top of all this, Yehoshua is miserable. The whole reason he needed
to come here in the first place was because he accidentally bit his hand – so we are frantically
trying to keep his hands away from his mouth. Plus he is crying, and grimacing, and waving his
head back and forth because he is so uncomfortable. It is soo heart wrenching and
unbearable watching him suffer like this. But we cannot give way to our emotions – there is no
time for that now, and probably not for a while. Now is the time that emotions must be put away for later. We must be strong to take care of Yehoshua.
We brace ourselves, emotions stuffed away on the side. There is vital medical attention
Yehoshua needs. We beg a passing nurse to find the specific nurse who is assigned to take care of
Yehoshua so that we can begin going through his meds. If we are lucky, she agrees with a smile; otherwise we get a stare saying something like “why are you bothering me?!” Finally the nurse comes. Just going through the entire med list can be an hour or two long process, making sure that they get the
right medications at the appropriate times with the correct doses. Fast forward through this
stressful, tiring process. Our headaches are at a peak. At last the nurse comes in to give
meds. We still must go through everything to make sure she has the right meds – because so many times even after we go through everything big mistakes are still made. Nechama looks at
the meds which the nurse has in hand – as we suspected we see one that doesn’t seem like it belongs. There are times that they could have the information written clearly right in front of them, and they still get it wrong. It is confusing, but this is someone’s life on the line! We ask her – and lo and behold Nechama was right. The nurse had the wrong medication – one
that could have been disastrous if Yehoshua got it. So now we have to wait another half hour just for them to
rectify this medication. And meanwhile all the other meds which needed to be given around the
same time are being delayed even longer.
And just to clarify, this is not limited to mixing up medications. We were told so many
times by so many people about so many other serious incidents of really scary mistakes which
occurred in the ER. One person told us how their baby was being given extra fluids. The
mother, who knew better than the ER staff how much fluids her baby had gotten already and
how much fluids the baby needed, insisted that the baby had enough. But to no avail. Not until
the baby’s arms began swelling and becoming blown up and the mother began yelling at them
that they must stop the fluids, did they finally listen to her. It has happened more than once that
even a few hours after we had arrived in the ER a doctor comes in to update us and after a few
seconds it becomes apparent that he doesn’t have the faintest idea of why we are even there!
Aside from the physical exhaustion of being on your feet for so long dealing with all the
stress – it is so so emotionally draining. You feel like you have no strength left in your body;
your brain is screaming for rest. But you can’t. Your child is seriously sick, and their life is dependent on you.
And this is all just the life and death issues that we must contend with. But then you have
to worry about basic hygiene. When they draw blood for testing, they aren’t cleaning up after
themselves. If you don’t want blood all over the stretcher, you have no choice but to clean it
yourself. One particular time we had been in the ER with Yehoshua for many hours, the floor was
filthy and no one could be found to clean up and there was no mop around – I took a few gauze
pads or whatever else I could find, got down and cleaned the floor by hand!
On top of it all, there are times especially in the bigger hospitals during “peak season” that
one can be stuck in the ER for 24 hours. There were times that we were stuck there in this unsettling state of limbo for more than 48 hours.
And the worst is that you can’t even know how long you will be there. They reassure you
and reassure you again that they are working on getting you out of the ER – but they are so
busy it’s hard to imagine they are working too hard on it. You can be left hanging there for hours,
going crazy sick worrying about medication mix ups and everything else that could go wrong.
Finally, after a few hours – a few hours too late, they successfully administer all of the
first round of meds, with the right dosages.
You haven’t had a moment to eat or drink or to even to go to the bathroom; and your
brain is reeling with exhaustion beyond belief.
BH by now we have the experience and forthought to bring some type of food with us
ourselves; Or we try in advance to make arrangements with the incredible volunteers who are
such gomlei chesed to bring us something to eat. At last we have a few minutes to grab a seat in the crowded, small, hot, ER room. We can finally at least physically rest our
weary backs and feet for a moment, and try to eat something. Yet now is really the first few
moments we can pay direct attention to our dear Yehoshualeh, who is laying there feverish and looking so so uncomfortable. And I have to make a decision. If I get up and spend too much time at his
bedside trying to sooth him and show him we are there with him, I may be giving up the few
moments I have to rest my weary body. It feels a drop selfish, but I know that I need these few
minutes of rest so badly because I need to conserve my strength for what’s to come. Once again
I must steel my paternal instincts. Lock them in and shove them somewhere deep into my heart. It appears
almost to be backwards; but at this moment my self control must remain stronger than my heart.
We go through some more scary mishaps with some other meds and us and Yehoshua somehow manage to survive through it. Finally we have a moment to think about sleep. Whoops!, all we have in Yehoshua’s ER room is one or two chairs. No bed to be found. We beg for a reclining chair at least but are told they’re all in use. A miracle occurs every once in a while and we’re presented with a precious gift – a kindhearted nurse takes pity on us (or we put up enough of a ruckus) and they somehow “find” a
reclining chair which is not in use.
If there’s only two chairs, its not even worth it yet to try to lay down and there’s nothing left to do but to wait, exhaustion wearing our eyelids down. The night moves on and things finally quiet down a bit and some semblance of calm settles in.
The meds situation seems to have gotten somewhat under control. We can finally think for real about sleep again. By now the hour is late, and even if I slept straight through the night it would be just a few short hours of sleep. Getting desperate, I sneak into the hallway, look around and grab a chair, hoping no one who sees will stop me. Hurray! – Three chairs! As soon as I begin to lay down the lack of fresh air – which my brain was too occupied
until now to notice – hits me. Regardless, I am so exhausted that at this point my brain is
screaming for sleep.
But right then a nurse comes in with more questions about Yehoshua’s care. That sleep
my entire being yearns for so strongly is snatched away right out in front of me. I answer the nurses
questions and am more than ready to slip into oblivion. I cannot allow sleep to take over me yet.
I cannot rest until I make sure that my wife is ok too. She’s been through so much, and as tiring
as the past 12 hours are for me, they must be utterly draining for her. Her love and dedication
for our Yehoshualeh knows no bounds. Food, drink, and basic necessities of survival slip to
the wee bottom of her ‘list of things to do’ while she is advocating with every last ounce of her
strength for our Yehoshualeh. I do what I can to make sure Nechama is doing as best as she can under
the circumstances. Finally, after checking the clock and seeing I have a mere 4 hours left to
sleep, I look over at our beloved Yehoshua, my heart goes out to him; then I succumb to exhaustion and fall asleep.
But the night is not over! Every hour (at least) for the next four hours, I am awoken by
the nurse coming in to the room with questions or to do something else. When the nurse isnt
keeping me awake the alarms from all the wires they have monitoring Yehoshua’s vitals
ensure that I do not get into too comfortable a sleep. Through it all, my neck and back are aching
due to my needing to squeeze into whatever position available to me – laying on top of three fold up chairs!
Fast forward. Morning comes and needless to say I am exhausted, headachy, hungry, and
stressed beyond belief. But thankfully whatever rest I managed to get gives me renewed strength
together with the prospects of a new day. The day moves on with Nechama and I struggling
through our tiredness to focus and try to take care of Yehoshua and keep him comfortable as best as
we could while giving instructions to nurses, talking to doctors, and doing anything we possibly
can to get Yehoshua out of the ER and onto the ICU floor. This would provide the lifesaving relief of
having an organized system with staff who can be much more on top of everything that’s going
on with Yehoshua, when we would finally be able to breathe a little bit.
We wait and wait and wait, and hope and daven. There have been times in the past that we have been stuck in the ER for close to 48 hours or even a little more.
Finally, later that evening the exciting news comes! A bed opened up in the ICU! Immediately the headaches tone down a bit; our lungs begin attempting to open a little more and allow us to take a semi-deep breath. Here again, of course it’s a whole mess before they actually get us upstairs. In the meanwhile, the attending ER doctor came over to us and said that an emergency case came in and that patient would need to take that room. Our hearts stop beating for the few long minutes it takes us with Gds help to work this new bump in the road out, but at last we arrive up on the ICU floor. Here again at least initially we must go through the whole process of making sure they have his meds down right. We must make sure they know what brought him there and what they are meant to try to treat. Then they need a reminder to order his formula, as there were times it took them over 24 hours before they just got him some food.
By now we have very little energy left in us. We finally finish going through all the meds
and instructions so that would ensure Yehoshua survives to the next day! We really want to stay
with Yehoshua in the ICU tonight but alas, at this point that is really not a viable option. Now that he is in a much safer place then the ER; and its time we think about taking care of our ourselves so that we don’t collapse and so that we may have energy for the day ahead.
It’s the first time in several hours that we can finally shift our focus off of Yehoshua. All the weariness since this all started comes tumbling down on top of us. All we want is to get home to a comfortable bed. But there are two major problems. Its already 10:30 pm. We are both exhausted and
don’t have any energy to drive home; and we are starving!
Enters Chava Gitty, (who we mentioned in the beginning of this article)! [This chesed of Chava Gitty is not yet the specific one this article intended to focus on, but
we could say that it starts here].
Chava Gitty is coming anyway to the hospital to stay with someone; and earlier she had offered to
bring supper from a restaurant. She made it so easy for us – we just let her know what we
wanted and that’s it. No big deal involved. And not only that, since she was staying in the hospital that night anyway, she told us that she would check up on Yehoshua throughout the night.
Because of Chava Gitty, the whole day we could anticipate knowing that once everything settles down with Yehoshua we would have a delicious hot filling supper to eat. Knowing that we
had a good meal waiting for us gave us the strength to push on that night. And we knew also
that once we finally get Yehoshua settled in though for own sanity we knew we needed to take
care of ourselves and go home, we could still be comfortable safe with the knowledge that
someone will be checking up on him. By now the food is cold and without us even asking, Chava
Gitty offers not only to bring the food to us but also to heat it up for us on her way! Wow! How
thoughtful. We didn’t have koach to go get the food or to warm it. We would have just eaten it
cold, otherwise.
I would like to take a moment here to explain. What I believe is so beautiful and great about this chesed that Chava Gitty did is specifically that which she was 1) proactive – and … 2) thought-through … in the chesed she did for us. She did not stop at offering to deliver food to us alone (which anyways by itself it’s a very nice chesed). She apparently thought through the fact that we had an exhausting day. She realized how helpful it would be to us if we wouldn’t need to go get the food from her ourselves. And it occurred to her that the food had gotten cold and that we would be so exhausted we wouldn’t have energy to heat it up ourselves.
We will return to Chava Gitty and her amazing act of chesed a bit later.
After spending some more time making sure Yehoshua is as comfortable as possible it is time
for us to go. It is so much easier for us to leave Yehoshua for his first night in the ICU knowing
that someone we know well will be checking up on him.
We drag our feet, exhaustion weighing down our every move. Don’t ask how – miraculously
I am able to drive us home and make it there in one piece. We manage to drag ourselves into our home. It is difficult to sleep properly under the circumstances but collapsing into bed, at long last we can rest our weary bones. What a relief! We can take a deep breath! We are finally able to try to catch some much needed sleep! There is another day waiting for us!
Fast forward. The next few days pass by in a whirlpool of spending most of our time in
the hospital, trying to eat semi-normally and then trying to catch a semi-decent sleep so that we
can have whatever energy possible to be there for Yehoshua. The doctors don’t really know whats bothering Yehoshua, and this murky unknown makes everything all the more harder for us.
To recap. We had gone to the ER on the first day of Chol Hamoed, Wednesday. Thursday night we got a room in the ICU. Erev Shabbos is an overwhelming rush of trying to cook, and then shlep Shabbos food and clothes and anything else we need to the hospital.
We spend Shabbos Chol Hamoed in the hospital. We were supposed to go to Baltimore for
Shabbos Chol Hamoed and stay for Shemini Atzeres and Simchas Torah. Wishful thinking. We
have spent three out of the past four Simchas Torahs since Yehoshua was born, in the ICU! But BH we have bl”ahora never had to be there for Yomim Noraim. So things can be worse. We try not to complain!
Throughout all this time Yehoshua is still miserable – inconsolable. BH most of the time
we have friendly compassionate nurses who more importantly are on top of what they need to
do, and make sure Yehoshua’s hand and face don’t get worse. But there is a limit to how
much time they can stay by his bedside. And there is a limit how much time we ourselves can
stay in the hospital and stay sane. We stay with Yehoshua as much as we can. Its such a taxing
physical struggle to stand and try to calm him down and make him comfortable. It is much much
more an absolutely excruciating emotional struggle – watching our dear beloved son who is
usually so smiley, happy, upbeat, and full of positivity, looking so downright miserable. This
indeed, is the most difficult part of it all and truly drains us of any energy we may still have.
Comes Motzaei Shabbos. At this point, we know from past experience that the hospital discharges when they feel the patient is ready and they certainly don’t take Shabbos or Yo”T considerations into account.
Whether we like it or not we must bear in mind that Yehoshua may be discharged on Yo”T.
The rehab that he will be discharged to is outside of the techum and we cannot bring food with
us in the ambulance. Luckily, we have some bread and coldcuts with us in the hospital leftover
from Shabbos. Exhaustion and all, on our way home from the hospital motzaei Shabbos, we
must drive to the rehab and bring the coldcuts and bread there, so that we will at least have
something to eat if we are indeed discharged there on Yo”T. Coldcuts should suffice if we are
transferred on Tuesday the second day of Yo”T; if we are discharged on Monday the 1st day,
we would be stuck with only one meal for the remainder of Yo”t. Now, on top of everything else, we have the worry about the possibility of our being transferred on the 1st day of Yo”t!
Erev Yom Tov, Hoshana Rabba, Sunday, brings with it a repetition of the same
experience we just had 2 days before on Erev Shabbos – the overwhelming rush of trying to
cook, (we try hard to have homemade food with us so that we can at least ‘semi-enjoy’ our Shabbos/Yo”T stays there) and then shlep Shabbos food and clothes to the hospital; and this time we had to do it for two days [of Yo”T] instead of one day [of Shabbos] which makes everything just about twice as difficult. Fast forward through Yo”T; we try to daven and feel the spirit of Yo”T a bit as best we
could under the circumstances. BH Yehoshua’s fever has come down; however he is still about
just as miserable as when he was admitted and some of his numbers from the blood tests are
still high. He is not back to himself yet – but we know there is a very slim chance they will listen
to our pleas to keep him for a day or two more until his numbers come down a bit. And it is still
so super difficult to watch him suffer so much while at the same time we feel practically helpless in easing his pain.
The doctors tell us that since his fever is gone, though they will continue watching him, he
seems better, and they are planning on discharge in the next day or two. To make things more difficult, of course, they cannot tell us when exactly that will happen!
The 1st day of Yo”T passes, and now we can breathe a bit better knowing that the earliest he can be discharged is the next day. Tuesday morning the second day of Yo”T, the doctors and staff come outside Yehoshua’s room for “rounds”. Emotionlessly, they tell us that they feel that Yehoshua’s is ready to go – his fever went down and they see no reason to keep him any longer. They will discharge him later that day. My wife valiantly tries once again to beg them to keep him a little longer – after all his numbers are still high, he still has barely slept at all over the past several days, and he is still very miserable. But
to no avail – I tell my wife that at this point it’s just not worth fighting. Once “rounds” are over I
can finally step out to daven. Just as I finish davening musaf, I come back to yehoshua’s room –
and Nechama tells me they spoke to her and BH the social worker told her that discharged is
scheduled for early that afternoon. We have just enough time to run and quickly wash and
shove down a “meal”, then we must get back to Yehoshua’s room to go with him for the transfer. We rush back to Yehoshua’s room, in time to get him ready for transfer. Miraculously, (and this is a story in and of itself) on our way, we stop off on a different floor where one of Yehoshua’s primary doctors have office, and we managed to meet a very important contact who aided us tremendously a few weeks later.
On Tuesday the second day of Yo”T, Yehoshua transferred back to the rehab. Yehoshua was certainly still not back to himself. The staff there work valiantly – and that’s meant literally, as they really tried their best – to make Yehoshua as
comfortable as possible. Once everything [besides Yehoshua] settle down, we happily
remember the deli and bread we had brought before Yo”T. We sit down and enjoy our “Neilas
HaChag”!, thinking of all the other frum Jews in the world who have been merrily dancing the
Simchas Torah day “away”. But we don’t allow ourselves to dwell on these thoughts for too long
– it is not beneficial at all nor is it healthy.
Fast forward some more. Wednesday and Thursday Yehoshua remains miserable which means
that those days were miserable for us too. As a last ditch effort we thought we may be able to
go to Baltimore for shabbos, but with Yehoshua being the way he is, there is no chance of that happening.
We prepare to spend shabbos with Yehoshua in the rehab.
Miraculously, for the first time, Yehoshua sleeps for a total of a few hours (on and off every half
hour) throughout Friday night! We can take a few more deep breaths! One cannot imagine the relief we felt! Shabbos morning he seems to be a bit calmer. Now we can breathe even better! We heave a huge
sigh of relief – there is a light at the end of the tunnel.
And then the nurse tells us that Yehoshua has a slight fever again. We are as hopeful as we
can, that it is nothing major and is only due to the room being hot or too many blankets on him.
The nurses try cool compresses and we try other ways to keep him cool, but to no avail. The
fever keeps rising. Shabbos afternoon comes and we eat our “seuda” hanging on to the hope
that the fever will come down. However as the afternoon passes Yehoshuas fever is still high. About
an hour before shabbos is over, the Nurse Practioner comes in and tells us that Yehoshua’s
fever is very concerning to her.
She feels …..(drum roll!) ……. that he must be sent back to the ICU.
We realize obviously that as much as we have no strength left, Yehoshua really needs to go back to
the ICU. Understandable we cannot even contemplate repeating again the hellish ER experience that we had just gone through a mere week ago. We beg, we insist, we try to make it as clear as is humanly
possible to this NP that we simply cannot return to the ER. We are not leaving the rehab until a
bed opens in the ICU and we can transfer straight there. The NP will have to call the hospital
and explain this to them.
The NP is BH very nice and is very sympathetic to our plight and she tells us that she will go work on it. We wait until shabbos is over, and then we start making whatever phone calls we can think of that may help ensure that Yehoshua can skip the ER and go straight to the ICU. The NP comes back and tells us that at first there was a possibility of an ICU bed being available but at the end the ICU reported that
there wont be any bed available until the next morning. We consider waiting, but the NP says
that at this point it may not be safe to wait so long. Now we have a difficult decision to make. We take Yehoshua’s temp again and we see that it got even higher. That decided it. We cannot take the risk.
Now those stress tentacles which still had not had much time to depart too far from our hearts are getting extremely difficult to keep at bay!
And then a nes happened. Just a few minutes after telling us that there was no ICU bed
available, the NP returned and said the ICU just called and said they actually have a bed, albeit
in a different floor in the hospital then were used to! Like it or not, this was certainly the best
option. My heart almost jumped out of my body from relief. We were almost jubilant – for a few
moments. Hashem in His great mercy knows just how much we can handle and how much we
can’t!! But we quickly landed back on earth. Though miraculously we have been spared the
gehinnom of going through the ER, we still had a lot ahead of us.
We go through the same hectic process as last time, to get Yehoshua ready for transfer. Fast forward. The ambulance comes, picks up Yehoshua, and takes us to the ICU.
I would like to take a moment to give perspective here. As relieved as we were to avoid the ER, we are still at the tail end of an utterly exhausting, overwhelming, stressful week, from our experience in the ER and from spending practically the entire Yo”T in the ICU. Yehoshua was miserable the entire time. And
now we find ourselves right back in the ICU which we had just been discharged from a mere few
days earlier. We are at wits end. We are wiped out through and through, physically and
emotionally tired beyond belief. And on top of all that we just landed back in the ICU, with an
entire new staff; new doctors, new residents, new nurses, new everybody, who we have to
contend with. BH it is not near as bad to the ER, but we now we have to go through the whole
process all over again, of ensuring the doctors have accurate information of whats going on,
making sure the nurses have the meds right, trying to get Yehoshua as comfortable as possible
etc etc. Alas, our brains and bodies are so mangled, we have literally no koach left – we are at
the very end of our worn-thin ropes. It would be ideal if we didn’t have to spend the entire night in the ICU again. The first 24 hours that Yehoshua is in the ICU are the most
difficult and most nerve wracking; so much could go wrong. We can’t just ask any volunteer to
stay with him; for these first 24 hours Yehoshua really needs much more. It is imperative for us
to have someone not only extremely capable and responsible, and most importantly someone
who knows Yehoshua well with all of his ins and outs.
In enters Chava Gitty in all her glory!
Chava Gitty is not only extremely capable and responsible – BH we have seen no shortage of others in the past like that, who have so kindly come to stay with Yehoshua; but Chava Gitty took it to an entirely new level. You will see how. You see, Chava Gitty made a decision. Chava Gitty’s decision was that when she comes to visit Yehoshua she would not stop and be satisfied with staying with him and playing with him, (which alone is a big chesed) – Chava Gitty decided that
she wants to learn to help take care of our dear beloved Yehoshualeh!
The reason this means so much to us is because in essence it means that on some level, there would be a third pair of arms joining us in shouldering the weight of the great, enormous responsibility of Yehoshua’s care.
When the NP in the rehab told us that Yehoshua may need to go back to the hospital because
of his fever we knew that we were in for a long haul; and we knew that after all we’d been
through over Yo”T we wont have the koach to make it through the night in the hospital. And then
we thought of Chava Gitty – who we knew would be just the right person – the only person –
that we can ask to come to the hospital last minute – who if she would be there with
Yehoshualeh during those first 24 hours in the hospital once we finished speaking to all the
doctors and nurses, we would feel safe and secure and feel comfortable finally going home and
get the life-saving rest we so needed.
As we anticipated, once shabbos was over and we could speak to Chava Gitty, she agreed
without hesitation.
Just the knowledge alone that she was meeting us in the hospital made things so much easier on us. Even before we left the rehab for the ICU our hearts were so much lighter, knowing that we would not need to spend another entire endless night getting Yehoshua settled in the ICU.
As she promised, Chava Gitty met us in Yehoshuas new ICU room just a short while after we
got there (a small though not surprising miracle happened that hospital security were very uncharacteristically accommodating for her). This was already past midnight! Immediately the enormous weight I felt we were carrying became so much lighter. There was someone in the room with us, at the time that over the past few years our load always felt heaviest, helping us shoulder the burden. Just having someone else in the room who wanted so much to help us and who cared about and loved Yehoshua so much, was so encouraging and lifted such an enormous weight from our hearts. Never before were we able to be so relaxed at the start of an ICU stay. Almost immediately Chava Gitty turned to us and said “these are the things I already learnt how to do with Yehoshua; now you have to teach me everything else you feel I will be able to learn how to do!” Hearing her say this made us feel so good inside! With all the stress around us, it was as if we were surrounded in an atmosphere full of care and warmth! This infused us with the energy we needed to face the task at hand. Now we had the strength we needed to finish getting Yehoshua settled. We discussed everything we needed with the
doctors, we went through all the meds etc with the nurses, and with Chava Gittys help we tried
to get Yehoshua comfortable. The whole experince was made so much easier being that we
had Chava Gitty’s company and her assistance. A few hours passed and it had already reached
the early morning hours.
Being that Chava Gitty was with us we managed to squeeze out our last traces of strength to take care of Yehoshua. By now it is really late. At this time we feel like we are driving on empty. Yehoshua managed to skip over the ER so we avoided going over the brink. Yet still, our red ‘gas tank empty’ light has been on for a while already and pretty soon it is going to be entirely empty. Once again we do not have an ounce of koach left. We feel we cannot stay a minute longer . . .
. . . And it is unnecessary for us to stay a minute longer! We can finally leave now, Yehoshua is
in Chava Gitty’s hands! We know that there is someone there who loves Yehoshua almost as
much as we do, but more importantly who knows enough of how to take care of him!! Even the
nurse tells us how happy they are that Chava Gitty is there and how much of a help she is! Its almost
like a dream come true – we do not have that crushing feeling of responsibility that we must
bear taking care of Yehoshua alone!
We miraculously make it home in one piece and collapse into our beds, into the life-saving sleep
which had been enabled for us that night by the deep thoughtfulness of a true tzadekes named Chava
Gitty.
And she doesnt stop there. Chava Gitty came back several times throughout the week. She slept in
Yehoshua’s room other nights afterwards. Before shabbos she came and straightened out
Yehoshua’s hospital room! Chava Gitty revived us! She truly lightened our hearts and gave us encouragement that we needed so much!
I would like to clarify.
I believe, (and I alluded to this earlier) that if I would describe in a few words what stands out to
me about the deep chesed that Chava Gitty did for us – is that she was thoughtful (thought-through) –
and more importantly she was proactive. Meaning – we are extremely grateful for the many people who have done so much chesed for us. And many
people have done an enormous amount for us. Yet what is unique about Chava Gitty is that she took it
to the next level. She was proactive – she did not stop until she did everything she could, taking
it so far as to decide she wants to learn how to take care of our Yehoshualeh herself. She was
proactive as she came to the ICU at almost one oclock in the morning. And her thoughtfulness
guided her proactiveness. She was thought-through. She anticipated re-warming the food she brought
so it would be hot when we ate it. She realized how pleasant a cleaner hospital room would be
for us over shabbos. She realized that we didn’t have the time or physical and emotional energy
or time to clean and she did it for us.
As I emphasized in the beginning of this article, everyone is in their own unique situation with
their own unique limitations, and the opportunities that one person may have to do chesed are
not the same for another person – and may not even be the correct thing for another person to
do, given their specific circumstances. Everyone has their own unique personal avoda which is
particular to them and the chesed they are meant to do is limited to that.
Yet if one is in the right circumstance, and knows someone who has a sick person in the family
and one is in a position where they can assist or learn how to assist in helping take care of the
medical needs of the patient – this is literally shouldering the families burden. This can provide a
huge relief and great encouragement to the family. So much so, it can be lifesaving, if not
literally then figuratively.
If this article articulates a clear image of what a family in this situation or similar goes through, and therefore even one person becomes more proactive, or one person thinks through a way they can
better assist a family in need, and this results in one more chesed being done and one more
person with a sick family member being helped – then the purpose of all the hours invested into
the writing of this article has been reached.
May the true, real, chesed and Kiddush Hashem Chava Gitty has made in our eyes serve as an inspiration to further more chesed and even more Kiddush Sheim Shamayim in the world.
L’zchus Refua Sheleima Yehoshua Ben Nechama Aliza; L’iluy Nishmas Chaim Pinchos ben Yaakov Yitzchok
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