To read part 1 click here
I guess I am finally going to force myself to finish our Mayo Clinic experience. It has been hanging over me since I wrote part 1 and I really need to get it out of my head.
Jonas was admitted to the hospital in the early morning hours of April 4th. Late in the afternoon of April 4th they admitted him into ICU. His electrolytes; (examples of electrolytes are calcium, magnesium, potassium, and sodium) were jumping all over the place. They felt he needed to be monitored more closely until they got them regulated. Electrolytes keep the body's balance of fluids at the proper level and help maintain normal functions, such as heart rhythm, muscle contraction, and brain function.
Jonas was released from ICU in the evening of April 5th. He had spent a little more than 24 hours there and they were able to stabalize him and felt comfortable about sending him back to his 7th floor room.
Joe's mom flew in on Saturday which I was so grateful for. She stayed with me in the hotel and we took the shuttle back and forth to the hospital together. It was such a relief to have someone else with me that could help me remember all the medical tests the doctors were going to do, to help me remember what questions to ask, to have someone to share this hard time with. I am so glad she came. Jonas was so depressed at this time and was so frustrated that no one knew what was going on with him. To say the least, he got pretty grumpy and onery at times! I am so glad Kathy was there to help me and Jonas through those days.
Kathy kept an online journal while we were there. I wish I would have done that! But here is what she said on Saturday, April 5th:
4:30pm - Dr. Tong came to discuss the planned testing and scheduling. He was as thorough and upfront as he could be. He told us of the Doctor’s and their specialties that had been to see Jonas or were on the team.
Doctor teams are:
*Primary (Internists) - Dr. Agrwal, Dr. Wilson Tong, Dr. Khan, Dr. Gill, Dr. Schuster,
Dr. Bravo
*GI - Dr. Miller
*Hematologist - Dr. Prommer
*Endocrinologist - Dr. Cook
*Infectious Diseases - Dr. Vikram
*Allergenist/Immunologist - Dr. Lewis
Much testing will be done including some repetitive testing of SLC’s if needed. Possible tests include: Bone marrow, sinus scan, broncoscopy, colonoscopy and more blood tests. There are other tests but I just can’t remember them. Dr. Tong just came in and said they are doing blood tests that are going to require A LOT… I mean A LOT of blood and hopes a transfusion will not be necessary. I (Kathy) stepped out to talk to Dr. Tong alone. I told him how down and discouraged Jonas is and asked what I could do to help. He said be prayerful… he is in God’s hands. They are going to do all that they possibly can to get to the bottom of this.
Kathy did such a good job of summarizing our days in her journal that I think I will let her journal do most of the talking in this post. :)
Monday, April 7, 2008
12:00pm - Brit and I arrive at the hospital to find Jonas eating lunch and in good spirits. Once more, Dr. Tong (internist), was in to see Jonas before we arrived. Dr Cook (endocrinologist), came in to discuss Jonas’ sugars and says he is doing well with his diabetes. About 1/2hr later, Dr. Karlin (hematologist) came in. She is working with Dr. Prommer and discussed and asked lots of questions pertaining to tests that were done in SLC. They going to do a bone marrow biopsy tomorrow.
2:45 Dr. Argwal (Head Internist), came in and she as well as the other Doctors are requesting test results from SLC doctors. They are having a hard time getting them which makes me mad because it is so important. If by tomorrow they don’t receive the test results they need we will see what relatives in SL can do to expedite this. Otherwise…. they are going to have to redo some of these tests which are not fun (colonoscopy, endoscopes and possibly the broncoscopy). Dr. Argwal suspects that the Micro Bacterium could be in his gut which is causing his diarrhea. He was diagnosed with the Micro Bacterium through his broncoscopy in SL back in July of 2006. They told Jonas at the time that it wouldn’t affect the bowel but Dr. Argwal said that there is a certain Micro Bacterium that does. This all stems from something in the immune system that they need to get to the bottom of. Of course this is all speculation until they get test results. Micro Bacterium is hard to get rid of and Jonas has been on a cocktail of 4 different antibiotics since diagnoses. They are worried it has returned.
4:00pm Jonas, Brit and I went for a short walk then back to the room for Jonas’ dinner. Jonas had his first meltdown which I knew was coming sooner or later. He vented his emotions. I know he is frustrated and scared. My heart aches for him. I told him he could vent at me anytime that he wished. It was hard to hear though. At 6:30 Brit and I took the shuttle back to the hotel.
Tuesday, April 8, 2008
11:00am - Jonas wasn’t in the best of spirits. It was almost a repeat of the night before. Bless his heart. He is struggling. But we are doing our best to keep him up. I believe there were more doctor’s in and out of his room today than any other day since I’ve been here. Two kidney specialists, doctor Cohen and doctor Kekich came into see Jonas. They think the kidneys are fine. Everything is pointing to an immune deficiency and they just need to see why. Tomorrow he’s scheduled for an endoscopy. He had one done in SLC and the doctors here wanted to see the slides to avoid another endoscopy. But somehow the slides were lost in SLC. Again, 6:30pm Brit and I left the hospital.
This is pretty much how each day went at the hospital. Doctor after doctor would be in to ask many many questions. We had to re-tell his medical history so many times. It was quite draining and frustrating to constantly be repeating ourselves. I know it was a necessary thing though and that they were just trying to solve the medical mysteries of Jonas Webster. (Jonas was called a medical mystery by the doctors in Arizona and Utah). They put Jonas on TPN on Wednesday, April 9th. TPN stands for Total Parenteral Nutrition. Jonas' body had literally been starving to death. He was diagnosed with malabsorption which meant most of the food he ate was going straight through him. His body had not been absorbing any nutrition for several months. Although he had to have been absorbing at least a small amount of carbohydrates because when his sugars got low he was able to drink juice and it would bring up the sugar levels. The TPN would feed his body the essential nutrients and calories it needed to survive.
Thursday, April 10, 2008
11:30AM Brit and I arrive at the hospital and was pleasantly surprised to see Jonas in GREAT spirits and even smiling. Wow that does my heart good. He’s doing well on the IV nutrition supplement. His sore throat could be caused from the oral potassium they’re giving him on top of the potassium IV, so they are stopping the oral. One thing I believe I have failed to mention is that Jonas is always cold and is continually asking for pre-warmed blankets. His thyroid is way out of whack which is causing the coldness. Dr. Agrwal came in to see Jonas shortly after Brit and I arrived. We discussed several things including his Sinusitis. He’s got a bad case of it and she suspects by looking at the cat scan results that he’s had it a while. He may have surgery for that. This very well could be the cause of his headaches. On a lighter note, Dr. Agrwal said that Jonas has probably broken a record for the most blood draws in the hospital. She said they have easily quadrupled the 18 tubes that were drawn at the Mayo Clinic on his first day. We all had a chuckle over that one. At 1:30pm Dr. Whitaker (endocrinologist) came in to discuss Jonas’ sugars. They’ve been going all over the board, mostly below normal. They are taking him off his insulin pump because he is getting insulin through the IV nutrition. This is a concern for Jonas as it has been his appendage for 10 yrs. He is also getting his thyroid med through the picc line. Picc stands for peripheral inserted central catheter. Having the picc eliminates many of the pokes for blood draws. There are a few that they’ve had to poke into a different vein or artery. Not sure why. He can have this picc line for several months with dressing changes every 3 days. 3:00pm Jonas took a long nap. At 6:15 Brit and I took the shuttle home. We left Jonas in better spirits.
At this time the doctors were coming to the conclusion that Jonas had CVID (Common Variable Immune Deficiency).
Common variable immunodeficiency (CVID) is a disorder that involves the following: (1) low levels of most or all of the immunoglobulin (Ig) classes, (2) a lack of B lymphocytes or plasma cells that are capable of producing antibodies, and (3) frequent bacterial infections. A diagnosis of CVID is reserved for those with an undefined B-cell dysfunction.[1] CVID is diverse, both in its clinical presentation and in the types of deficiency. Although decreased serum levels of immunoglobulin G (IgG) and immunoglobulin A (IgA) are characteristic, approximately 50% of patients with the deficiency also have diminished serum immunoglobulin M (IgM) levels and T-lymphocyte dysfunction. About 20% of those with CVID develop an autoimmune disease.[2]
Signs and Symptoms of CVID include:
- Hypogammaglobulinemia: low levels of immunoglobulin G (IgG), immunoglobulin A (IgA) and/or immunoglobulin M (IgM).
- Poor titer response to vaccination with polysaccharide and protein antigens (e.g. pneumococci, tetanus, and diphtheria).
- Recurring infections involving the ears, eyes, sinuses, nose, bronchi, lungs, skin, GI tract, joints, bones, CNS, paratoid glands, etc. These infections respond to antibiotics but recur upon discontinuation of the medications. Bronchiectasis can occur from severe and recurrent lung infections.
- Viral infections that usually respond to antivirals.
- Enlarged lymph nodes, Enlarged spleen.
- Fatigue.
- Abdominal pain, Bloating, Nausea, Vomiting, Diarrhea, Weight loss.
- Malabsorption.
- Helicobacter pylori, Giardiasis, Cryptosporidiosis, Small bowel bacterial overgrowth syndrome, etc.
- Atrophic gastritis with pernicious anemia and achlorhydria.
- Nodular lymphoid hyperplasia of the GI tract.
- Villous atrophy of the small intestine, which can resemble celiac disease.
- Inflammatory bowel disease.
- Aphthous stomatitis.
- Increased intestinal permeability.
- Polyarthritis, or joint pain, spread across most joints, but specifically fingers, wrists, elbows, toes, ankles and knees. In some cases, Mycoplasma can be the cause.
- Children may show a "failure to thrive" - they may be underweight and underdeveloped compared with "normal" peers.
- Candida infection of the lungs.
- Anxiety and depression, usually as a result of dealing with the other symptoms.[6]
(All the ones I highlighted in red were symptoms Jonas had.)
There were some tests that had to be sent to Pittsburg that would verify if Jonas did indeed have CVID,
but all of his doctors were leaning towards that diagnosis. I left to come back home on the night of
SaturdayApril 12th. I felt so guilty about leaving Jonas, but I had been away from our boys for 12 days
and I needed to get home to them. Again, I was so incredibly thankful to Joe's mom Kathy that she was
willing and able to stay with him until he was released.
Tuesday, April 15, 2008
Got to the hospital around 12:00pm. Jonas was not on tpn (total parenteral nutrition) so he was feeling weak and tired. They are doing it for some type of test. I can sure see where it helps him. He just needs so much nutrition. Well… Dr. Tong came in to give us some bad news. Seems that he has been making effortless phone calls into SLC up to the University of Utah Hospital’s doctors to get one of them to follow-up on Jonas’ tpn when we land. It’s critical stuff and he can go without it up until the next morning after arriving in SL. He has not been able to reach anyone yet that can help. How frustrating is that. Unbelievable!!! So as family… we are making calls to get Jonas into someone within his insurance network and it’s best if we can stay with the U of U network. Jonas is beyond frustration and I’ve tried to calm him to the best I can since I’m so frustrated too. I did leave him with a smile on his face at 8:00pm. I just about fell over myself onto a chair and then onto the floor because I was so heavy weighted on my right side with my laptop strapped over my shoulder. I just bent over to pick something up and well….. Yup… I just about biffed it. I really think that’s the biggest smile I’ve seen on his face since being here. Even a broken arm would’ve been worth it to get a laugh. It’s 9:15pm here at the hotel and I’m just about ready to turn in. So… until tomorrow…..
Jonas was released on Thursday, April 17th.
Thursday April 17th
Arrived at the hospital around 9:00am and realized that I had forgotten Jonas black “U” baseball cap. Oh know!!!! The shuttle driver (Victor) had already left so I called them to finagle something to get it back. Unbelievably, Victor returned with the hat and just dropped it off. I missed him so I didn’t get to tip or thank him. Hilton Homewood Suites has been awesome. I’d stay again anytime. I need to send them a thank you. I’m thinking of sending them a “Designer cookie” gift. Now, back with the hospital, arrangements were being made to release Jonas. This hospital is incredible in how effective and organized they are. Every base was covered including the nurse that would be waiting for Jonas at his house to give him his TPN. Tearful goodbyes were said. I’m so thankful for these doctor’s and all that they’ve done for Jonas. He weighed out at 110 lbs. He has a long way to go but I’ve got faith that all will go well. He will be on the 1700 calorie per day TPN regiment for at least 3 months.
We arrived at the airport around 11:45. Our flight takes off at 1:15pm I believe. Arrived in SLC around 3:30pm. Jonas was worn out bless his heart. It doesn’t take much. We were greeted by Brittney and the boys. It was cool how that happened. Jonas, the guy that was pushing his wheelchair and I got on the elevator and dropped a floor. As the door opened… there sat Jonas’ little family. What a great reunion that was.
I clearly remember when those elevator doors opened and we happened to be sitting on a bench right next to the elevators. We didn't even know he was on the elevator right then. He looked so frail and worn out, but he had tears in his eyes and he was so happy to be home. Sam and Ben gave him a hug and Jonas could no longer hold back his tears. He was still so sick but at least we (kind of) knew what we were facing and that for now the TPN would eventually start to make him feel better. We once again had hope and that was what we needed to get through the next few years. With hope you can get through anything. When Jonas arrived home he saw what our neighbors had been doing for us. We live in an amazing neighborhood and I have the most wonderful friends. I will post about our homecoming soon....
(Note: I was just looking over this post and I think because I did so much cutting and pasting it has made the fonts and sizes very crazy. I have been trying to fix them, but it won't let me. So sorry about the messy looking and hard to read post! Every time I try to make the fonts bigger it changes them back when I publish the post. The same thing happens when I try and change the font. It is driving me crazy so I guess I just have to leave it the way it is!)
