Prayer needed more than ever (Facebook Oct 25th)

All, 

Please continue or renew your efforts to lift up this wonderful little guy and his sweet family before the Lord.  I can't imagine what they are feeling or going through having to walk this path with their son.
(Chad)

"Jonathan hasn't seemed like himself since his extreme pain episode. His eyes have been rolling back and have been going cross eyed. He hasn't been signing or smiling. It has been hard to tell whether he is really seeing us. Today he just seems unable to really control his bodily movements and has had some bouts of flailing and hoarse screaming and he seems pretty scared. There is a thought that he may be having seizures. A neurologist visited us and we are in line for an MRI this afternoon. And once again we ask for you to lift him up to the One who is more than able to make everything right. We are depending on Him to see us through all of this."

Recent Updates...

Below are some Facebook updates from this last week:  Thanks so much for praying!


September 15th:
Jonathan is doing better today!  He got to take off the mask this morning and has been using a nasal cannula with good results. He has been getting rid of some of his fluid retention with the help of diuretics. We are still in the PICU, but things are looking a bit better today!

September 14th:
Not much to report on Jonathan. He is still in the PICU. His ins continue to be more than his outs and he is still all puffed up. They've added another diuretic on top of the lasix. He has a little mask covering his eyes, nose and mouth, creating a seal like a scuba mask, which is pressurizing the oxygen going into him to help fill his lungs. They had switched his NG feeding to ND feeding and now they have stopped the ND and are giving him TPN IV, this is because they can't be sure he isn't refluxing his feeds and aspirating them. The docs can't really say why this is all happening, just trying to treat the symptoms until his body gets back to doing its job. 
Xav is still on for nights with Jonathan. He is getting pretty tired. Lord willing, Grandpa Xavier will be here tomorrow evening and enable Xav to get some much needed rest.


September 13th:
Jonathan moved into the ICU this evening. His breathing has been too labored for too long. His body has continued to retain fluid. I'll try to update again in the morning. Please pray for our puffy son and his tired daddy.


September 10th:
The doctors gave Jonathan lasix yesterday which drained some of the excess fluid that has been building up in him. The albumen in his blood was a little low which somehow figures into the proper functioning of the arteries in getting rid of excess fluid. So this morning they gave him albumen and lasix again. He's still puffy and acting uncomfortable but not quite as puffy as he was yesterday. And still needing some blow by oxygen.

Jonathan's lungs have been a big concern lately. He has been dealing with fluid building up around them. He's had lots of chest X-rays lately and the one from a few minutes ago shows more build up of fluid and possibly some collapse of his lungs. He is visibly laboring to breath. Xav's been up with him since 4am. ...Seems like these bigger lung problems have popped up after being put under for a CT scan a few days ago and then again for a broncoscopy and wash to see if anything bad is growing in his lungs. Jonathan's poor little body is swollen. His eyes were nearly swollen shut yesterday. ... He's not in the ICU yet, so we think that is a good sign. ...Just still asking for prayers, in Jesus name. We are trusting the Lord. Jonathan's life is in His hand. He is good and He loves us. The doctors are trying to do what is best but their ability is so limited. So glad we can call on the One Who is more than able, Whose wisdom is infinite.


September 6th:

Jonathan started getting some of his ANC (absolute neutrophil count) back a few days ago. So that is something positive to think on. But other than that he is seeming pretty uncomfortable. He had a CT scan this evening to see if there might be fungal growth in his lungs. No news on that yet. He's had a lot of low grade fevers over the past week and a lot of throwing up and they are trying to get to the bottom of it. Just requesting more prayers for our little boy, and while you are at it would you please throw in a prayer for the rest of us, that we would find refreshment in Jesus and be walking with Him. Thanks. 

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Thank You!

I've been so wanting to get a new post written up for our "Jonathan's Journey" blog. ...Life. ...I've been posting a little on face book. Wish I could just get to typing every day. Right now I have my Jonathan and my Patience napping in Jonathan's hospital room and Xav has the older two walking to Great Clips. Xav and Xavi are due for hair cuts. 

Jonathan has had a lot of outpatient time over the past few weeks. He was discharged on August 4th, after his second round count recovery. He had a whole week of freedom, although still tied up with the NG tube and needing IV antibiotics. We made it to the aquarium during that time. He made it to church two weeks in a row as he had gotten a four hour pass the weekend before. 

He was readmitted for his third round of chemotherapy on Monday, August 11, and had chemo administered every 12 hours for five days. We've gotten used to being inpatient for whole rounds so we were kind of surprised and a bit uneasy when we learned that Jonathan would be released after the five days were done. So we, once again, were all together at the Ronald McDonald House on Saturday evening, August 16. We prayed that Jonathan wouldn't get any infections and watched for signs of them. He had to stay in the room (in isolation) during this count dropping time, except for going to the hospital twice a week for labs to keep track of what was happening in his blood.

After nearly a week of being "free" the fever did strike.

Patience actually got a fever first, on Friday morning. On Friday evening, August 22,  Jonathan was restless at bed time and sometime just past midnight he started throwing up in his bed. We took his temp. Yes, fever of 102 point something. He was getting the shakes. Xav tried to get a hold of the on call Hem/Onc doctor, but that was not seeming to go fast enough so I kissed my husband and son as they left our room and headed for the ER. 

We knew that Jonathan would be readmitted upon becoming febrile and would be inpatient until count recovery. So that is where we are at now. They started up antibiotics to get the infection/fever under control. They also changed some of his meds that he has been on for a while as he has developed a sensitivity to one, causing his skin which was already red from sunburn to become more red and swollen. 

Jonathan's ANC is 0. Every morning, as the doctors make their rounds and gather in Jonathan's room to go over his situation and plan for the day, our ears perk up to hear those blood count numbers. Are they going up yet? Will he need another transfusion? He's had a couple platelet transfusions this round already. Looks like he will need a blood transfusion tomorrow. ...Thank you, blood donors, for making this treatment possible for our little Jonathan

Thank you, Lord, for carrying us through all of this, for having good plans, for the love that's been showered on us from family and friends and even strangers! Thank You for the sweet nurses and doctors and CNA's and maintenance people at the hospital. Thank You for allowing us to stay at the Ronald McDonald House and be a part of people's lives there and for the meals from volunteers there.  You have given us so much to be thankful for. 

Thank you all for praying for Jonathan and us. Thank you for being a part of our lives and for loving us! Jesus bless you!

Quick Update

Xav and Xavi accompanied Jonathan back into Seattle Children's Hospital this morning to start chemo round number three. The girls (mommy, Moriah and Patience) will join them over there in a bit, after getting some laundry going in the Ronald McDonald House "RMH" laundry room. ...We had a great week together as a whole family! We even made it to the aquarium on Saturday! 

PNJ in their mobile bunk bed

Is that a "strong arm" I see?!

Xavier & Moriah (and No, they didn't do that to the tree!)

Someone just placed a little life in that sea creature!

Chip off the ol Block!

No words necessary :)

Smiles!  Proof that Jonathan is a chip off the ol block!

Nothing much new... THANKS!

Nothing much new here.

Jonathan's numbers are back down to zero again, have been for the past few days. He got a blood transfusion this morning. His vitals have been stable. He still doesn't want to eat, but that is okay for now because they are putting nutrition directly into his blood. Isn't that crazy?! With the GI feeding tube they could bypass his mouth, but now who even needs a stomach?! He... still manages to get sick though, and gave back some of his oral meds this evening.

Our stay is feeling a bit long already. Xav and I are taking turns staying the night in hospital with Jonathan. Tonight Patience and I are here, and Xav is at the Ronald McDonald House with Xavi and Moriah. We've only been here a month and a half. We've chatted with some who have been staying at the Ronald McDonald for two years!

I just so want to thank anyone who has contributed to us financially. Xav, our family's provider, had his heart set on looking for work here the moment we settled into our first hospital room. He was praying for work. But I was praying that he'd be able to stay with me. I knew I couldn't manage family life in this setting without him. Well, the Lord is so so kind to me. Our needs have been met and Xav is getting in some really great parent-child relationship time.

I am so THANKFUL!! Thank you friends and family and thank you, Lord! We are so undeserving, but we are so thankful.

Ursula

Thank you, Chad, for filling in! Here is what I just posted on Facebook...

 

Good morning. I am just wanting to update on Jonathan a little bit. He wasn't doing so well yesterday. He has been dealing with diarrhea for a few days, also still vomiting a few times over the past few days and seeming not too comfortable. (Maybe the flu that Xav and I had?) Very early in the day yesterday he spiked a fever of 104, his heart rate was reaching 200 and his blood pressure was too l...ow. Xav called me early and told me to wake Corrie and to start praying for Jonathan. We prayed, in Jesus name. Xav told me there was a possibility of Jonathan going to the ICU.

I made it in time for doctors' rounds at a little after 9am yesterday, leaving the kids sleeping at the RMH, but taking Patience who stayed sleeping in her car seat . The docs were still uncertain of the root of the problem, labs weren't quite complete yet, but they were guessing Jonathan had an intestinal infection. Xav thought it was our flu, but the Attending Doctor shook his head when Xav suggested that. He said there is a common intestinal bacteria that can cause infection, especially after having had antibiotics and especially in the hospital, and with the lab results that had come back so far that morning ruling out other possibilities, that was their expectation. So they started Jonathan on a broad spectrum antibiotic. All his vital signs were needing to improve. They seemed especially concerned about his blood pressure, seemed like that was key, if it didn't improve he'd be going to ICU. They gave him blood transfusions and extra IV fluids.

Corrie brought Xavi and Moriah over to join us an hour or so later. So we were there as a family with Jonathan. He looked terrible. His color was really pale. He was really lethargic. He's been on regular doses of meds to help with nausea and yesterday morning they added meds for fever and for pain, so it was hard to tell what was causing his sleepy lack of response, but he just didn't look good. His vitals were being checked every hour. His fever slowly came down, his heart rate dropped into a more acceptable range and his blood pressure came up enough to keep us out of ICU. He was getting blow by oxygen to keep his O2 levels up. He went from being colorless to being bright red as the antibiotics hit his system and after a while his color looked more normal. They were watching/listening for fluid build up in his lungs which could result after receiving a large amount of IV fluid. His body did get a bit puffy, but his lungs continued to check out okay.

We left him last night after feeding him a little dinner (Yay! He was eating something! Yogurt, applesauce and peas.) and after sitting up for a while to watch some children's sign language videos on YouTube. He wasn't doing great, but he was doing alright. Thank you, Lord.

Xav texted me at 2:18 this morning and told me Jonathan was getting more IV and was being moved to ICU. He texted again at 3:46am saying that Jonathan was doing good, that they were checking on him every two hours, and the nurse thought they wouldn't be there long. I didn't read these texts from him until I woke up a little before 6:00am. I tried texting back, but I'm guessing he's sleeping, he had to move all our stuff out of the room at around 3:00am. So I'm waiting to hear the details and will try to find time to pass them on. Thank you for praying for my tired husband. Thank you for praying for our fighting son. The Lord is our help. He is good.