Bli ayin hora there is good news today. After a very rough 2 days Elis fever is IYH gone for good and he is off both blood pressure IVs. They were also able to remove the machine they had up his right arm artery to check his blood pressure constantly which was very painful and uncomfortable the whole time for Eli. The cultures are also showing what the DRs feel that they are getting the upper hand on the infection.

Eli is currently still in the ICU and will remain there tonight for observation to make sure he stays stable on the fever and blood pressure monitors. They hope to move Eli to a regular room sometime Monday. They will then decide how much longer they feel he needs to stay in the hospital. The hard part now is that the antibiotics has been harsh on Elis stomach and even though he hasn’t eaten or gotten TPN since coming to the hospital he is having extreme diarrhea 2-3X an hour. BH he is back as of tonight on TPN and hopefully it will help settle things and get Elis weight back on track.

Hoping to continue only having good news but as always please keep Elimelech Ben Basya in all your tefilos.

Eli remains in the ICU as they continue to wean him off the blood pressure IVs. His blood pressure has for the most part stabilized and they have significantly lowered the blood pressure IVs but they haven’t fully been able to get him off it yet. However the cultures have come back positive for an infection which they have been giving him antibiotics since he got to the ER for and are hoping it will do the trick. They feel it is a line infection which means they may also need to temporarily remove his line to let the infection heal but hopefully the medication will let it heal and it won’t have to come to that.

Over Shabos Elis fever spiked to 105.5 at a point but for now its mostly between 101-103 which is manageable. They have him in a cooling blanket to try to keep the fever down. They did a procedure Friday night where they inserted in his arm artery something that updates every second his blood pressure. He will be in the ICU until he’s off the blood pressure medication and they feel they have the infection under control.

Thru all this Eli is very tired and sleepy from the many medications he’s on but is completely aware of what’s going and is asking all the regular questions he always does and even cracked a few jokes BH. The DRs will evaluate him a few times a day and we will take one day at a time and hope he can get out of the ICU as soon as they feel he is stable enough to go to a regular room. He will need to be on IV antibiotics for 2 weeks hopefully some of that will be able to be given at home once they feel he is ok to leave beezrat hashem sooner then later.

Thanks once again to 2 of the “uncles” that stayed with us for the Friday night meal and for the other uncles that entertained the rest of the family at home. We also today had Rabbi Ten and Yitz Wurzburger who always come to visit when we are in CHLA for Shabos took the long walk to visit us in the 105+ degrees and was very much appreciated. Rabbi Korf from the local Chabad also came today. Thanks so much to everyone really means a lot to us.

Please as always continue having Elimelech Ben Basya and all cholim in your tefilos. A GUT VOCH

As of 2PM Eli has been moved from the ER to the ICU because of very high fever and very low blood pressure. It will probably take at best 24 hours before they feel comfortable moving him out of the iCU. He is on 4 IV antibiotics and 2 blood pressure IVs. BH the blood pressure medications seems to be helping and that has mostly stabilized. However the fever is still very high and they are pretty sure at this point that he has an infection and that’s why they are treating him with so many different IVs.

Elimelech Ben Basya lrefua shelayma.

There wasn’t much to update this week as Eli was doing very well with each passing day spending longer in school. This morning Eli went to school as he did most days this week but shortly after getting there called Bassy that he wasn’t feeling well. He was immediately picked up and brought home. Once he was home things went downhill pretty quickly. He spiked a high fever and was shaking uncontrollably to the point that he needed to be rushed by ambulance to CHLA.

He was taken to the ER where his fever was above 103 so they as always immediately take blood cultures to try to find the source. In the meantime the have started a few different antibiotics as a precaution if CV there is an infection. IYH the cultures will come back negative but it takes a full 48 hours to get the final results and generally speaking they will admit Eli for minimum that long. So it looks like we will be spending Shabos in CHLA.

Please have Elimelech Ben Basya in all your tefilos. A GUT SHABOS

The last week or so Eli has been vomiting suddenly without the normal nausea that usually comes first. He also has been having to use the bathroom more often then he has needed in the past. Today we were at CHLA from 9AM to 4PM for scheduled transfusions which he received both blood and platelets. While we were there they took an x-ray of his abdomen to see if anything looked out of the ordinary that maybe causing the vomiting and extra bathroom visits and BH all looked ok. They think this maybe the result of the TPN and may possibly change some of the contents accordingly.

They have for now scheduled a CT scan for 8/23 and we are waiting for when they will schedule the MIBG scan. They won’t be doing bone marrows as they just did that in NY. Other then that there isn’t much on the schedule until we get the results other then probable weekly blood and platelet transfusions.

In the meantime please as always continue having Elimelech Ben Basya bsoch shaar choley yisroel in all your tefilos.

For the most part Eli had a good week. His appointment for Thursday was rescheduled for Monday. He made it to school for a few hours both on Wednesday and Friday and we hope slowly to keep him there as long as he can handle. Nausea side effects from the MIBG therapy and being weak are very much in play but Eli the champ has made it no big deal.

Please as always keep in mind Elimelech Ben Basya in all your tefilos. Chaya Mushka Bas haddassa Shayna bsoch shaar choley yisroel is also in middle of chemo this Shabos and can use some extra tefilos. A GUT SHABOS

The last few days bli ayin hora Eli has done pretty well with for the most part. This morning we were at CHLA at 8:30AM for a scheduled stem cell transplant. After drawing Elis labs we were informed he would need again both blood and platelets. The procedure started with hydration for 2 hours then stem cells for a few minutes then platelet transfusion followed by TWO units of blood which hopefully will last for the week so that he doesn’t need another transfusion until next week. By the time all this was done it was after 4PM.

Wednesday morning is the first day of school and we hope to send Eli for as long as he can last. The DR gave us the OK to do this and hopefully there will be many days this year that he will be up to it physically and emotionally etc.

Thursday afternoon we will IYH be back in CHLA for a scheduled DR appointment and to schedule the next step which is scans. Based on those scans which will probably happen at the end of the month they will decide on what further treatments are needed and where to do them.

Please as always keep Elimelech Ben Basya in all your tefilos.

We are looking forward to Shabos after a unexpected pretty eventful week at home. Eli was in CHLA Wed morning for a GI appointment which he didn’t get to see the DR for. They “punished” us for coming at 8:55 instead of 8:40 by telling us we are going to be the last appt of the morning which would be at 12:30. Even after explaining them that the reason we were “late” was because Eli had a vomiting and diarrhea episode that morning they didn’t pretend to care so we said bye and left.

Thursday morning Eli was back at CHLA for transfusions where he got both blood and platelets and during then was seen by the GI DR for the literally 45 SECOND appt. After that Eli headed to his regular DR for a appt. It was a very hard and long day at CHLA from 9:30AM -6:15PM but Eli together with his Bubbys help did it like a champ.

This coming week on Tuesday IYH they will be giving Eli back some more of his own stem cells to hopefully boost his blood levels after the MIBG therapy. It is done outpatient and it will probably followed by transfusions once again. There isn’t a clear treatment plan after that other then at some point later in the month of SEP they plan on doing scans to decide on what further treatments should be scheduled.

Please continue as always having Elimelech Ben Basya in all your tefilos. A GUT SHABOS

Over Shabos Eli did a lot of resting and relaxing after a very tough week of traveling, being stuck in bed, more traveling and then of course surgery. By Shabos afternoon Eli was already insisting on going to shul for shalosh seudos which he made it for and enjoyed. After almost a week of not being on TPN and losing a good few pounds as a result BH Eli is back on it now and hopefully gaining much needed weight.

There isn’t much on the agenda for the next while other then to recuperate and have labs drawn and when needed transfusions given. The next step is another scan in a few weeks to see what the MIBG therapy did and from there the DRs will decide what treatment to continue with but probably another few rounds of chemo.

On Monday 8/25 will be Elis 9th english birthday (Chuf Av was his hebrew birthday) and all we can hope for is 111 more years of nachas and beezrat hashem good health. Elis smiles, humor and strength that have gotten us thru some difficult times should be smiles of only besuros tovos.

Please continue having Elimelech Ben Basya bsoch shaar choley yisroel in all your tefilos.

We got to CHLA at 7AM and they already had the platelets and all set up and waiting so we avoided the waiting process for that. After taking the medication that he needs before a transfusion and then getting the transfusion it was 9:30 at which point they did all the pre op stuff and then we did what we do best and waited and waited. Finally at 12 they wheeled Eli into the OR and BH the good news came just before 1PM that BH all went well.

Eli is very weak and tired and sore from the surgery but they felt he was up to leaving almost immediately after the surgery and he was home by 2:15 and is resting. Beezrat hashem this will be the last issue we ever have with his line.

Shabos hee melizuk urefua krova lavo. Elimelech Ben Basya lrefua shelayma. A GUT SHABOS.