After finally getting Eli settled in with all the new contraptions and supplies for this NG tube he had a good nights sleep in his own bed. He woke up in a good mood and that’s how the day went. Day 7 of 12 of radiation went by well and beezrat hashem will continue that way. Later in the afternoon we had the whole family for a BBQ in honor of Elis birthday. It was extremely special and enjoyable having his cousins all wear birthday signs and singing happy birthday and just having them made Eli so happy.
IYH Eli will have radiation a little earlier on Wed to allow us to get to the wedding on time. And we have been notified of the schedule in the coming weeks which after the radiation is done Eli will undergo a full round of tests CT, MIBG, bone marrow etc.
Please continue to daven for Elimelech Ben Basya bosch shaar choley yisroel as we continue doing everything possible to keep him happy, strong and fighting.
After more then 5 days in CHLA Eli finally got the ok to go home early this morning. We got home at about 9AM but had to go back for day 6 of 12 of radiation for a 2:30PM appt. BH it went well and as usual bli ayin hora being home made a big difference in Elis mood and also him wanting to eat again. Eli will continue to be on the NG tube until the DR feels comfortable enough to remove it and he will be receiving feedings thru it each night until then.
We are looking forward to the next few days of enjoying family time with the cousins and uncle and aunts etc. Eli really enjoys their company and we hope to make the most of the few days that they will all be here.
We hope to continue to see daily improvements for Elimelech Ben Basya and hope that the medications and feeding he is receiving will help him gain the much needed weight and strength he has lost over the past few months. Thank you to the people who have reached out and helped this past shabos and the few days that Eli was in CHLA with hosting Bassy and the kids.
Beezrat hashem tonight will be the last time Eli is in the hospital for a unplanned unscheduled stay. When your mentally prepared for it somehow it seems a little easier. The unexpected and then extended longer even are not easy to put it mildly. Eli BH is made out of different material then we are and is extremely calm and generally in a very good mood but I think even at this point he has had enough and wants to go home. IYH tonight will go smooth and we hope to be able to squeeze him in for the first radiation appointment of the day so that once he’s home he can stay home and relax for the day instead of coming back again later in the afternoon.
We don’t have an exact amount of time yet but for the near future Eli will be getting extra nutrition thru his NG tube as well as regular food. They taught us how to clean and attach the NG tube to the pumps etc so that when Eli gets home we can take care of it without a nurse. Eli is looking forward to the next week full of fun with his cousins who are coming in for my sisters wedding IYH this Wed night and of course to enjoy the actual wedding. Eli still has to come back daily for 7 more radiation treatments which hopefully will continue to move smoothly.
Please continue to daven for Elimelech Ben Basya in hopes that he will be able to go home in the AM on Monday and stay home without CV any further complications. We look forward to some sense of a little normalcy for ourselves and mostly Eli and his siblings back at home as a family.
Friday night was one of the more inspiring I have personally ever had. After taking a short walk with Eli once Shabos began I told Eli I was going to daven and then eat the seuda with him. We sang together kabalos shabos and then when I finished Maariv Eli took the siddur and davened every word. He felt a lot older the whole shabos being that it was his hebrew birthday and expected and got birthday wishes from most of the nurses. Shabos morning after we davened we spent most of the morning and early afternoon playing a few different games.
We were then visited by Rabbi Korf who told Eli a few different stories which he thoroughly enjoyed and helped break up a long day. We took a few walks around and had a few bites and relaxed most of the rest of the day. Late in the afternoon Uncle Reuven and his friend came to visit which we very much appreciated as well. For some odd reason after all was going so well today and the NG tube level being raised on schedule Eli came down with a fever. As always they take a blood culture which takes up to 48 hours to get results and they immediately put him antibiotics to combat any infection CV.
We hope Elis body will continue to accept the feedings its getting at the rate he needs to reach so that IYH he can go home Monday morning as long as they don’t give us a hard time with this fever which hopefully will pass.
Please as always continue to daven for Elimelech ben Basya and all cholim and we hope that this unexpected bump in the road which already is longer then initially told will end and allow Eli to go home in good health Bkarov. A GUT VOCH
Bli ayin hora late this afternoon Eli went to the bathroom and for the first time since April 6th (surgery) he didn’t have diahrea!! It seems like the medication and NG tube are having a positive effect. Eli as usual is in good spirits and enjoyed that a lot of the family, uncles, zaidy and cousins came to visit before shabos. This Shabos Chuf Av is Elis hebrew birthday so his room is decorated with balloons and signs etc (thank you Tante Shevy). We look forward to 112 more birthdays for Eli in good health.
Eli had his 5th of 12 radiation today and BH continues to go smoothly. They are also slowly raising the amount they are putting into his feeding tube and BH he hasn’t had any problems with that. We will be spending Shabos here at CHLA but hopefully on Sunday he will beezrat hashem be able to go home from this unexpected hospital visit and hopefully he will be stronger and weigh more then he has by then and only continue that way.
Today the LA community and the world are all davening for many of its cholim but one in particular that is in desperate need of rachmay shomayim Ruchama Avigayil Maima Rochel bas Rifka Penina who is local woman whose tzidkus knows no boundaries and IYH we will all be zoche to see her bsoch shaar choley yisroel have a refua shelayma so she can continue her chasadim and be with her family in good health.
Shabos hi melizuk these days isn’t taken for granted and we daven to take those words literally for Elimelech Ben Basya and unfortunately to many other cholim. A GUT SHABOS
Eli is already pretty well adjusted to the NG tube and hasn’t complained about it today at all. He woke up late after going to sleep late and so far things have hopefully began to head in the right direction. While he is still have diahrea it seems to of slowed down a little bit. He also bli ayin hora gained a little weight. Both are very good signs which we hope will continue on a quicker pace. They started on one formula for the feeding tube and now are trying a second one and then will decide if its working and how much to do and for how long to do it.
Over the last 8+ months we have learned many times over that you always have to have someone with a child or patient in the hospital to “oversee” the nurses and today was a prime example of that. They were meant to change the formula and pick up the speed as the first formula didn’t seem to be any help and instead the nurse was about to pick up the speed of the formula that wasn’t working. It happened not to be her fault as she was just following the computer the fault was the DR who ordered it and only changed the speed and not the formula.
BH Eli had round 4 of 12 of radiation and things seem to be pretty smooth and with no side effects as long as he takes the nausea medication prior to it.
Beezrat hashem things will move along and we will have a good day on Friday for Elimelech Ben Basya and will see positive weight gains.
After a good night sleep and a good breakfast it was back to CHLA at 11AM. After going thru the admitting process and getting to the room and settling down it was 1PM. After just a few minutes it was time for radiation round 3 of 12 which was very quick once again and BH had no side effects. We got back to Elis room and had discussions with a lot of different staff as to what we feel and what they feel is the best way to go to get Eli to gain some much needed weight. We spoke with the surgeon in NY, his old DR, a GI, a dietary consultant and the oncologist. We decided to go ahead and try the NG tube and see if helps at all. Finally at about 6:30 they inserted the tube which takes about 30 seconds to do and isn’t painful just not pretty or comfortable.
Slowly Eli is adjusting to this tube now hanging from his nose which stretches deep into his stomach and has lots of nutrition going thru it. Hopefully he will get a much needed good nights sleep and will continue to adjust to this tube. They will know by Thursday or Friday if they feel it is doing what they want it to do and will decide and plan on the course of action from there. In the meantime he is inpatient and only connected to this tube and no IVs.
Please continue to daven for Elimelech Ben Basya bsoch shaar choley yisroel as we try to get to the bottom of the diahrrea problem and the loss of weight. IYH we will see quick and good progress so we can help Eli get back to full weight, strength and health and be zoche to a refua shelayma.
The morning started off very good with Eli eating and relaxing. He then went to play with his cousins by his bubby and zaidys house. At 1:30 it was time to go back for day 2 of 12 of radiation which went very well and we were out in a few short minutes and were headed for his 3:00PM with his DR. Unfortunately that did not go well at all. Although he has been eating a very nice amount his continuous diarrhea has taken its toll and he has lost more weight to a dangerously low level.
This had the DR extremely concerned and even though we have been saying this for a few months they finally agreed that they need to take action. As a result they have decided the next step will have to be a NG tube which is a line that goes thru the nose and will serve as a temporary feeding tube. It does not require anesthesia to put it in but it will require Eli to be inpatient for a minimum of 72 hours!!! Not at all what we or he wanted to hear but at the same time we can’t bare to see him as skinny and frail as he has gotten. This NG tube will feed him as well as the regular foods he can continue to eat but the tube will stay for at least 30 days and isn’t exactly the prettiest looking thing. We need to do what we need to do to get Eli gaining weight. Beezrat hashem this will do the trick and then hopefully thru other medications they will be able to figure out how to control the diarrhea or at least slow it down.
Eli will IYH continue with the radiation while he is in inpatient at CHLA and hopefully they will have a bed for him as early as possible so Eli can get in and get out as soon as they allow most probably after Shabos.
This evening to give Eli some enjoyment prior to his hospitalization he came along to a very close family friend of ours chuppa and really enjoyed every minute and it also really lifted his spirits after having to put it mildly a rough afternoon which as usual he took in stride and understood that we are only doing all this so in order to reach the ultimate goal of nothing less then a refua shelayma.
Elimelech Ben Basya will need our tefilos the next few days as this will be a test on his and our sanity as well as what we hope will do the trick to finally get him to gain weight and strength.
We got what we wanted last night and Eli woke up stronger then he was yesterday. He ate a decent amount this morning and then at 2:30 headed for CHLA. They drew his blood prior to the radiation and then finally into the radiation room. For the actual time the radiation is taking place only Eli can be in the room so we prepared him for that and BH he was very brave and didn’t move so as long as that continues they will be able to do it without anesthesia. We were in and out in a few short minutes and hopefully that will be the case every day for the 12 sessions he needs. After the radiation was done we got the blood results which were very good and BH he doesn’t need a blood transfusion. On our way out of the hospital the DR reminded me that its possible that Eli will be nauseous later in the evening. Unfortunately he threw up many times but felt fine right before and right after. We now know that he will need to take nausea medication for the next few sessions and hopefully that will prevent the nausea.
On Tuesday he first has a DR appt with his new DR prior to the radiation so it will be a little bit longer then what usually will be taking place daily. We got the blood draw out of the way so hopefully the DR will continue to be satisfied with how Eli is doing and we will be out as soon as the radiation is done.
1 down 11 to go with the radiation and beezrat hashem Elimelech Ben Basya will continue as he has with the other treatments to do them and move on one day at a time. Please continue to daven for him and all cholim.
Eli had a pretty good day today he ate a very nice amount but for some odd reason was a little weaker then he’s been lately. Hopefully it was just being tired. He needs a good nights sleep that beezrat hashem he will get tonight so that he can have strength for the big day on Monday. His appointment isn’t until 3PM and is supposed to last a quick 30-60 minutes from start to finish and hopefully it will but at CHLA nothing runs on time and we always plan for a lot longer and are happy when it actually turns out quick.
Please continue to daven that Elimelech Ben Basya will have zero side effects from the radiation and that IYH his blood counts will be high enough that they can begin radiation and do what’s needed so we can finish this part of the treatment and move on to the next part.